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Calle

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  1. Thanks for the info! I'm going to pass it onto my dad. I have been telling him just go on the diet and see how you feel, but he's stubborn and always wants to believe what the doctors tell him. At least where I live, I think the doctor's are way behind on Celiac and gluten sensitivities.

    I went through the Enterolabs because I was frustrated after 25 years of no answers except for the repeated diagnosis of IBS. I was not going to do ONE more invasive test, which when they did them never even tested me for Celiac. Ever since I went on a gluten free and dairy free diet I have improved and I'm feeling better than I ever have.


  2. Hmmmm...

    I started waking up in the early morning (like 4am) totally sweating maybe a month ago. How weird. I'm only 40. I wonder if I'm perimenopausal - my cycle has been really off lately.

    I'll be watching this thread - night sweats are totally new for me.

    I've been gluten-free for 10 months, so it can't be gluten.

    Sorry to be "all about me" on this post. It's just very strange.

    I'm 45 and I'm in perimenopause. My cycle is all over the place too. I know this is getting into a whole other topic, but for the past 1 1/2 years I have been using bioidentical hormones (natural) to help with menopause. When your in menopause most of the symptoms you get are because of progesterone deficencies. It's all about balancing the hormones and it can be tricky. I'm constantly tweaking the creams I use. I too get warm at night and have to throw the covers off. I used to get night sweats years ago, but I don't any longer.


  3. I had a positive blood test for celiac. I've been gluten-free for two weeks. I was glutened a week ago. Since being gluten-free, I haven't been symptom-free. I continue to deal with mucus in stool, nausea, dizziness. Is it possible I have something else? Should I worry about not being symptom-free? I've also been dealing with abdominal cramps these last four days. Needless to say, I'm quite worried. I'm on a waiting list for the colonoscopy but it looks like I won't undergo the procedure until end of November/December.

    It took me 4 months before I started to feel better. I have been sick for 25 years. It takes time to heal. Most people I have talked to including some experts have said give it 6 months to a year. I also had to get off of dairy and I think I may have some other food intolerances. Hang in there.


  4. Ahhhhhhhhh-HA!! I was trying to think of what York Labs changed their name to. :o

    I did their 116 (or so) food panel a couple yrs ago and, while expensive, it helped me treMENDously!

    I recommend it. :)

    I have been doing some research on this IgG testing and it's confusing because there is so much controversy on it. Some say it's not accurate and does not mean that you have food intolerances. Some doctor ordered tests through York Labs under several different names and stated that the tests all came back different proving to him that IgG testing is not valid. I'm not sure what to think.


  5. Does anyone know if there is any type of food intolerance testing? I know food intolerance is different than food allergies. I know allergist only typically test for the food allergies. I have heard about IgG testing, but is there any lab around that does this in the U.S. and is it accurate? I feel I have a number of food intolerances besides the gluten & casein and I'm not even sure where to begin if I were to do an elimination diet.

    Thanks,

    Calle


  6. I have YET to meet a good GI! I have fired every one I have gone too. The first one had me get my gallbladder removed at the age of 21, which it didn't need to come out. So now I live with not having a gallbladder the rest of my life, which causes problems. Here's a good one for you.....my last GI suggested I change the type of BUTTER I was eating. He didn't even know what digestive enzymes were.

    I have struggled for over 20 years with digestive problems, but never giving up to find an answer. I did it on my own by researching and knowing that I was not crazy. The only good thing about all of this is that I turned to natural medicine which has helped me along the way more than any prescription drug ever did! I turned to the Enterolab to get my diagnosis on gluten intolerance. I was finished with all the invasive tests they had put me through in the past. I have had two endoscopies and not once did they look for Celiac by doing a biopsy because you know Celiac Disease is rare. I lost my faith in doctors a long time ago!

    Calle


  7. Has anyone out there discovered that they also have issues with fructose? I just read by doing some research on the internet that it is common with some people with Celiac to also have issues with fructose. I noticed years ago that fructose seem to be a problem for me before I ever realized that gluten was an issue. I also have a problem with casein. Sorbitol is like poison to me. So I'm thinking what am I supposed to eat!!!! If I didn't have to eat to survive I would just give up on eating. It is so stressful to me to try and eat ALL the right things. I have been pretty much gluten free for two months now and I'm not feeling any better. I'm just having a bad day today. I certainly don't want to feel sorry for myself, but if I would get to feeling good then I would eat whatever it is to continue to feel that way. I haven't felt normal (whatever that is) for over 20 years with my stomach.

    Calle


  8. I have taken digestive enzymes off and on for several years now. I was looking at trying a new digestive enzyme by Enzymedica and I came across one of their products, it's called GlutenEase. I was just wondering if anyone out there has hard about it or has tried it? Here is the link http://www.enzymedica.com/products/GlutenEase

    Now I certainly wouldn't use that and think that I could safely eat gluten or casein in my diet, but I wonder if it wouldn't help with the healing????

    Calle


  9. Hi Everyone,

    Can anyone out there tell me if they also suffer from peripheal neuropathy along with having celiac disease? My father has suffered from peripheal neuropathy for the past 30 years and it's from unknown origins. He does not have diabetes. His mother had it, his brother and sister have it along with his sister being diagnosed with IBS. Now my second oldest brother is showing symptoms of it. I don't have it, but was diagnosed through the Enterolab for Celiac. I am just wondering if this isn't all linked through my family. I just find it so strange that so many people in my family are getting peripheal neuropathy.

    Thanks,

    Calle


  10. Hi Susan :)

    Your mom's doctor is woefully ill informed.

    Can you get your hands on a copy of Dr. Green's book--"Celiac Disease--A Hidden Epidemic"?

    On page 52, he states:

    "A key consideration for all of the tests described is whether the patient has been consuming gluten before being tested. Results of all the tests will return to normal on a gluten free diet."

    He then goes on to describe the gluten challenge, which he states "involves a biopsy, not blood tests, after a period of eating gluten".

    I am reading Dr. Green's book now and have read other books besides doing research on the internet. I was diagnosed through Enterolab like several others on this board. I have fired many GI's in my area and was not going to do anymore invasive tests like the biopsy. I've been through enough over the past 25 years! The way I understand it is if you take the blood tests they are not accurate because if you do not have any damage in the small intestine, which some Celiac people do not, then the tests are a false negative. Not all Celiac's have damage in the small intestine, but that doesn't mean they don't have the disease. Also, on the biopsy's, if the doctor doesn't get the biopsy of the tissue where the damage is at then that will also come back negative and once again it doesn't necessarily mean that you don't have it. This is how I understand it and I don't know if that is correct or not.

    Calle


  11. Yes I have celiac and had gastritis and still get it if I get glutened I also have mitral valve regurgation that kind of interesting . I started taking betaine hydrochloride 600 mg 2 at a time before each meal and chew two are three tropical papaya pills and don't take any tums are rolaids are nexium any more . Hope this helps my Mom has had a bad stomach since 1964 and has lived off of tums and other stomach pills she has gastritis and adcid reflux and hernia and I got her on this and she doesn't take any of the other stuff any more no more pain and having to throw up because it would sour and she would have to get it up to get releif she can't beleive the difference.

    I have also suffered from gastritis for the past 2 years. Sometimes that drives me more crazy than my other symptoms. I get so tired of feeling that pain in my gut. It's strange because at times I won't have it for months and then it flares up and I have it for months on end. I have taken licorice root tablets and that helps. I will have to try the papaya pills. I know papaya is really good for digestion. I have thought about trying the betaine hydrochloride, but I have read that if you have gastritis you shouldn't take them. I'm afraid it would make the pain worse?????

    Calle


  12. The following thread has a list of support groups in IA that I ran across while searching for my sister. I live out of state. I contacted the one for Waverly this year and they were very helpful in getting me in touch with a Cedar Rapids support group, which is not on that list.

    http://www.glutenfreeforum.com/lofiversion...php/t20192.html

    Thanks for the info. I'm doing okay with the diet from doing my own research and reading a number of books. I just thought it would be nice to be able to meet with others for support and different ideas or tips on eating this way. I have noticed that eating gluten free the items are not enriched with vitamins like your other grain products, which concerns me because I already have a malabsorption problem with vitamins/minerals. I guess I will just have to supplement, but I have to be careful in what I take because my stomach is so sensitive when it comes to vitamins and minerals.